BARRY’S JOURNEY No. 12

As I write this in April, I look back to January when I made the decision to move Barry into an assisted living facility. I thought it would be a breeze, and he would be safe and cared for. But things can change quickly with frontotemporal dementia (FTD).

I got through February, which is I Love to Read Month and my busiest time of year. But I started getting calls from the assisted living place saying, “Barry won’t do this or that, and Barry keeps getting out.” (He had figured out the alarm doors pretty quickly.) With only one bath a week given by the nursing aides, giving him a shower was up to me and I could not handle him. Once he fell in the tub and almost hit his head as he tried to escape. Another time they called me to help get him dressed because they couldn’t handle him. It was a horrible scene when I arrived. Barry was naked and had had a toileting accident. It took all my strength to get him cleaned up. I thought that the staff was supposed to assist with this. That’s when I realized that this was not the place for him, and all the peace I felt at first disappeared.

The issue with choking

Barry was still going to the adult day care three days a week. On those days, I knew he would be OK, and they would clean him up if he needed it. But then one day the daycare staff called to say that Barry had choked on his food during lunch. I knew that people with FTD lose the ability to swallow, a fact I had learned during an FTD conference I attended at the Mayo Clinic.

The conference was very informative, but no one spoke about how a person dies from FTD. So at the end of the conference, I raised my hand and asked. That’s when I learned about choking – a person with FTD eventually loses the ability to swallow. The experts also talked about other complications, but I had stopped listening at “they lose the ability to swallow.”

And things get worse

Because I was out of town so much on speaking engagements and not available during mealtimes, Barry actually stopped eating and drinking. Apparently he was not being assisted in his assisted living facility with eating. He quickly became dehydrated and weak. The staff called me as I was driving home from a speaking trip to say that Barry had been taken to the hospital by ambulance in a weakened, confused state, maybe dehydrated and unable to swallow.

I am sorry to admit that when Barry’s FTD was getting bad, I wished he would die. But now as I drove in a panic to the hospital, I didn’t want him to die — at least not yet! I couldn’t help but wonder if he wrote that love letter to me because he knew he would die soon. With fluids for dehydration, his confusion improved to where it was before this episode.

But he was still not eating. I know he is scared to choke to death. His doctor decided then to take Barry off some of his behavior control medications to determine his current state of . Still weak, Barry was sent to a care facility – what we used to call a nursing home. There he became a bit stronger and worked with a speech therapist to learn to swallow again. It wasn’t a week later that the assisted living facility called saying Barry could not return.

Was this care facility now his new home? At the same time, I was moving into a new apartment and now I would have to move Barry as well.

Having been through hospice with my now-deceased sweetheart, I know that you can live a long time on Ensure and milkshakes, diluted to the point where they are more easily swallowable. I am so sorry for the heartache on this journey with Barry!

Nancy, we just want you to know that we are following your stories and are thinking of you. We are dealing with a similar situation with Doug’s mom and your stories have helped us know that we are not alone and your strength has kept us going! I can’t imagine facing this alone – you are amazing. Yes the world of assisted living and nursing care is pretty shocking. Take care – we are thinking of you. Maggie and Doug

My husband receives Mayo’s professional mailings. I noted the FTD conference and thought of you. I don’t know what to say but I’m so sorry. This path must be unimaginably difficult and lonely. I respect how you’ve handled things and want you to know your sharing continues to touch many people.
Colleen Ruegemer

Nancy, I am so sorry. We are going through a similar journey with my mother but that’s not the same as a spouse. I took care of my husband for 2 years while he died of cancer. My dad died of a quick fatal heart attack at 52 with 5 children still left at home. None of it is easy. Just keep putting one foot in front of the other, that’s all we can do. Best to you.

I hope when this horrible struggle is over for Barry and the rest of your family that you compile your blog entries into a book. It could help a lot of people who are “putting one foot ahead of the other”, just as so many of your books for children have guided kids down the happy path of childhood. As we are reminded so often, not all of the paths we tread in this life are happy ones. It’s the ability to put one foot ahead of the other that tells volumes about who you are. God bless.

Nancy, have you thought about Parkinson’s Specialty Care. A private residence staffed 24-hours (763/550-1774) Homes in Edina, Bloomington, Mplewood, etc. Also, when it comes to moving — call Rose’s Daughters, my friend Margaret McGonagle’s company. She and her sister built it — their mom’s name is Rose.
They move people — all ages, all physical abilities. They are gentle and easy to deal with. Eddie is the manager. If I could google them right now I’d get you the ## but you’ll have to do it.
Also Breck Homes are similar to PSC — private homes caring for folks with mental, memory issues. They lock the doors, use monitors anything the client needs.
Yes — we should write a book together. Love and hugs, Jean
You are not alone in this journey.

Dear Nancy, How much I wish “they” would devise a protocol for helping people move their loved ones with these sorts of progressive diseases to the proper place as needed. But since every case is different, I suppose that’s almost impossible…. Paul was in various hospitals at various times during his last two years of life, as the reperfusion brain injury he had when they tried to put in a stent after his stroke was such an enormous set back. They did have social workers who tried to get him to the right place, and he did recover enough to return home for a year and a half before something else happened. His red blood count dropped dramatically for no reason I was ever given, and then the blood transfusions made him so ill that he was back in a nursing home until they had an accident with his feeding tube which put him in the hospital where he died a few days later. There are terrible moments and terrible decisions to make. I hope you find good help, which I had with Paul, especially at the end. I am praying for your, because I remember how difficult this time is. Every case is so different and always so heartbreaking. You should never feel guilty, though it is almost impossible not to. You are doing the best you can in an impossible situation.

For every challenge, there is a happy memory. Don’t let this overwhelming darkness cloud the good times.
My mother had dementia. We don’t expect young people to have it. Alzheimer’s just seems to be a lump sum word. She forgot to swallow. We were lucky that Meredith was working in a nursing home and new what to and how to guide us through this time of decline. We were fortunate to be able to have home health care for her. She never wanted to go to a home. There is such a difference between 89 and 60. Be strong and hold on to your faith. Sending you love… Gladys

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Amid loss, Minn. author Nancy Carlson still makes children's books. Writer and illustrator Nancy Carlson recently read from her new children’s book, called "Sometimes You Barf," at Red Balloon Books in St. Paul. Read More at the Star Tribune